2022 was supposed to be the best year of my life, and in some ways, it was. I finished my sophomore year at USC, which was my first year actually on campus thanks to COVID. This is a story for another day, but my first semester was tumultuous and stressful due to being away from home for the first time, living with a roommate who did not like me very much, moving in the middle of the semester, and then having both of my new roommates (my friend and my sister) leave only a few weeks later because of their own health issues. Needless to say, I was ready for my college experience to really begin now that all of that was out of the way and I had settled into school. I was taking some amazing classes from even more amazing professors. I had an incredible group of friends from a Bible Study at my church, and I was determined to get over my usual introvert habits and make a lot of friends. Aspen and I spent a lot of our free time developing our non-profit, Stagebugz Theatre, which was a major dream come true, and I started a student organization at school. Being in LA meant access to exciting acting opportunities and life adventures. I worked for the on-campus event production company, which meant that sometimes I would literally get paid to watch concerts, dance recitals, and theatre performances that I would've otherwise paid to go see, and I got to be an RA in the fall, which I absolutely loved. And, to top it all off, the year ended with a three-day "Very Merrytime Cruise" on the new Disney Wish followed by three days at Disney World, which is pretty much the best vacation I could imagine as someone whose two favorite things are Christmas and Disney.
Sounds pretty awesome, right? Don't get me wrong, I am still very grateful for all of these experiences. I would remind myself constantly how lucky I was and that I needed to live in the moment, but I honestly had a really hard time enjoying any of it. No matter how much fun something was, I almost always just wanted it to be over so I could go home. While I've always been a bit of a homebody, this was on a completely new level. When my church took a trip to Disneyland at the end of the spring semester, I caught myself often checking the time and counting down the hours until the bus came to take us back to campus. When I was on set for projects that I loved working on, I felt surprisingly relieved every time I was wrapped for the day, even though in the past I would've wished I could stay all night. During Stagebugz summer camps, I had an extremely hard time waking up every morning and I often wanted the day to be over. I was exhausted all the time, no matter what.
What was wrong with me?! My newfound desire to not do anything really freaked me out. Was I lazy? Depressed? An ungrateful spoiled brat? I worried that I was never going to be able to enjoy my life. How would I handle a 9-5 office job or 16 hours a day on a film set if I couldn't handle four hours of summer camp or 12 hours at Disneyland? How was I going to get through the next (hopefully) 60+ years of my life if all I ever wanted to do was go home and lay in my bed and do nothing? Life suddenly felt long and miserable, and I felt like it was my fault. I went to church as much as I could, promising God every time that I was going to do better from now on. I was going to take advantage of every opportunity even though I didn't feel motivated to. I was going to live in the moment and stop wishing things were over and taking them for granted. But, without fail, every time I left the church, I forgot about that promise and went back to being miserable and wasting the days away.
Then, in June, those symptoms I had been ignoring for the last five years suddenly got much worse. I wish I remembered what triggered it, but it seemed to be completely random. The muscle pain had become increasingly uncomfortable throughout the last two years, but it became unbearable this summer. The stomach pain went from spontaneous to constant. It felt like I was swallowing knives every time I ate something, and I had terrible acid reflux and nausea, and pretty much every other issue that comes with stomach pain. My headaches became so intense that it felt like I was going to pass out. You know how when you touch something staticky it sometimes shocks your finger? That's the only way I can describe how my head felt. I went to the doctor for these issues, and they told me to buy some Tums and Miralax and to go to therapy because these symptoms were probably all due to anxiety. So I did, and I started taking an anti-depressant in hopes that it would cure my lack of motivation.
I will probably say this a few times in this blog post, but I just want to mention that I really appreciate medical professionals, and I don't blame (most of) them for not giving me the right answers. I know they were all doing their best, and many people spend years or even decades waiting to get a diagnosis. I don't mean to sound crass when discussing my experiences with them, but I do think there are also a lot of issues in the medical industry, and it's hard to not get a little bit frustrated when you're miserable and it feels like most doctors just brush it off. Also, I think therapy is great and psychiatric medications can be super helpful for a lot of people. I'm sure these things were helpful to me in some ways, but it wasn't the right solution for what I was dealing with.
I spent the latter part of the summer going to various doctors and getting the beginning stages of testing done. After a particularly awful couple of days, I went to urgent care to see if we could fast-track some of the testing, but the doctor saw I was taking Zoloft and decided my stomach pain was just caused by anxiety. Then, I moved back to California for school and my insurance changed, so I basically had to start back at square one. After visiting the student health center to get new referrals for the specialists my doctor in Colorado had already suggested I go to, I scheduled an endoscopy with a gastroenterologist and an appointment with a rheumatologist at Keck, which is the medical center associated with USC, as soon as I got to school. Unfortunately, neither of them had appointments available until October 5. I remember the date because I spent the two months leading up to it looking forward to it and dreading it at the same time. You may remember me saying in Part 1 that I hate having my blood drawn. I have an irrational fear of both needles and inner elbows (that's normal, right?), so blood draws are one of my worst nightmares. I had to have it done twice over the summer, and I practically had a panic attack both times. So I'm sure you can imagine my excitement about having to get an IV for the endoscopy and having to get my blood drawn on the same day. My mom flew out from Colorado to come with me to these appointments since I knew I couldn't handle them on my own.
On October 5, I had the endoscopy done and miraculously survived having a horrible IV stuck in my arm for two hours. They didn't find anything, and the doctor confirmed her suspicion that I just had IBS and I was getting stomach aches because I was anxious. I was starting to hate hearing that tests came back "normal" for two reasons. First of all, I certainly didn't feel normal, not even my normal which often included some kind of pain and discomfort. Secondly, the more tests that came back normal, the more I felt like an idiot. This must all be in my head if they can't find anything wrong. Maybe it is all because of anxiety or OCD, or maybe I'm subconsciously exaggerating how I feel and making myself worse.
The rheumatologist appointment later that day was the last bit of hope I was grasping onto. Some of the tests I had done over the summer suggested that I might have an autoimmune issue like lupus, which seemed to line up with my symptoms. Since the semester started, my joint pain became increasingly worse, and I really, really needed to do something about it. Like I said, it had now been five months since this flare-up started, and because of my terrible stomach pain, I hadn't been eating very well for the last few months. I hated the bloating and nausea and exhaustion and stabbing pains that came with eating, and I avoided eating before classes or meetings because I didn't want it to interfere with my ability to succeed academically. It wasn't even a conscious choice to eat less, it was just that I didn't feel hungry anymore and I felt full after eating the tiniest amount of food. I still felt like I was eating a lot; I was hyperaware of trying to eat enough because I certainly did not want to end up in a situation like what Aspen went through (read her story in "How Vegetables Almost Killed Me"). Unfortunately, five months of this caused me to lose about fifteen pounds, which is kind of a lot for someone who is only five feet tall. I wasn't that concerned about it because I was still significantly better than Aspen, who had been trying to gain weight for the last nine months, so I wasn't anywhere near as bad as she was when she had to go to the hospital. I figured once my stomach issues were solved, I would go see a nutritionist, drink some Ensure, and all would be well.
The gastroenterologist hadn't expressed any concern about my weight a few hours earlier, but the rheumatologist couldn't see past it. She was nice and I could tell she was trying to help, but she immediately attributed all of my problems to my low weight, and so did the following series of doctors I saw over the next month. I was a teenage girl on anti-depressants who had lost a lot of weight and had a twin sister who was underweight, therefore I must have Anorexia. I was probably making up the stomach pain as an excuse to avoid eating, and the fatigue and joint/muscle issues were a result of malnourishment. I appreciate the concern because I know that a lot of people who experience eating disorders never get a diagnosis, but this was immensely frustrating to me. It felt dismissive and honestly kind of sexist; I have to imagine that if I was a boy, this wouldn't have been their first assumption. But here was more proof that all of this was in my head; it was my fault.
Everything quickly went downhill from here. The rheumatologist decided that I needed to be monitored at the school's Student Health Center, and since Keck was a part of USC, she didn't need my permission to share my medical concerns with the school. I got a call a few days later about coming in for an evaluation by the head of Student Health, who was the same person that kicked Aspen out of school almost a year earlier (we'll call her Dr. O.). I immediately knew this was a bad sign, but as I said, I weighed at least ten pounds more than Aspen did when they sent her to the hospital. I never in a million years expected that she would say I needed to go to the hospital.
At first, she didn't. She just said that I would need to leave school and find some sort of treatment program. This didn't make sense to me because outpatient eating disorder treatment programs are therapy-based and for people with restrictive eating disorders. Dr. O. told me that she believed I had something physically wrong, not anorexia, so I'm not sure what she thought this kind of program would do for me. I told everyone over and over again that all I needed was to somehow figure out what was wrong so that eating would become a little more bearable, but they were all so stuck on this weight thing that they were unwilling to look past it. I just needed to get my weight back to normal and then they would figure out what was wrong, some of them said. Others said that once I gained weight, all of my problems would go away and I would feel all better.
About a week after my first visit with Dr. O., she decided that I needed to go to the hospital after all. I was required to see her nearly every day that week (and get blood drawn every time), and my last set of labs showed that my liver wasn't functioning properly, which is common in people who are severely malnourished. This would fix itself once I started eating better, though, and there was no reason I needed to be in the hospital for that. I wasn't at risk for refeeding syndrome, which is one of the main reasons people go to the hospital for medical stabilization. There was no way I was going to go. After the traumatic experience Aspen had there, that was just about the last thing I needed. This was supposed to be my normal year of college. I was supposed to be getting better. I was not going to throw everything down the drain for an unnecessary, miserable stay at the hospital. Of course, I am not a doctor, so it may seem stupid of me to think that I would've known whether or not I needed to go. But I knew from my sister's experience that literally all they did was give her food and draw blood to make sure her electrolytes weren't imbalanced. I can understand the need for that sort of structure and oversight if someone is extremely sick, but I was not. And, most of all, I was already miserable, so I couldn't stand the thought of being forced to eat whatever the people at the hospital decided to give me around the clock when I had this terrible stomach pain all the time.
At first, my parents agreed that it was ridiculous to suggest I needed to go to the hospital. But I think they were also understandably paranoid after everything that happened with Aspen, and Dr. O. quickly convinced them that she was right. They kept telling me that they "didn't want to make the same mistakes that they did with Aspen," but my argument that I was in a much better position than Aspen had been was always met with "stop comparing this to Aspen." What felt the most ridiculously unfair was the fact that I still, on the day I went to the hospital, weighed more than Aspen did, yet she was still at school going about her normal life. I also felt absolutely terrible that all of this was happening; how could I have let it get so bad that I had to go to the hospital when everyone was telling me all summer to "make sure I didn't end up like Aspen." And I knew how this would look to other people: Aspen went to an eating disorder treatment hospital and now I was going to one, so the only explanation must be that I wanted to lose weight, I wish that wasn't so upsetting to me because people who do have eating disorders shouldn't feel ashamed about it, but there's still so much stigma around it that I really didn't want anyone to think I had an eating disorder.
I fought with my parents and the doctors more than I ever have in my life (I usually hate conflict). It may sound silly that this was so important to me, but it literally felt like I was giving everything up-- the classes I had already worked so hard in, the RA position I loved, the student organization I had poured so much into starting, what was supposed to finally be my normal college experience-- to go sit in a hospital and feel worse than I already did. Dr. O. basically wouldn't let me come back to school until I had gone to the hospital, though, so I didn't have any other choice. I think what felt the worst throughout this was having no autonomy over my own medical care. I was an adult, I was the only one who knew how I was feeling. No, I wasn't a doctor, but I'm pretty sure I still had at least some idea of what was best for me. Dr. O. kept using cancer as a comparison, saying that if I had cancer, I would want to get better, so I should think of it like that and put everything on hold. But I doubt the school would be allowed to force someone with cancer to get one specific treatment, so why were they allowed to force me to? It's not that I didn't want to get treatment; I wanted nothing more than to get better, I just strongly believed this wasn't the next best step, and I was tired of not being given any say over what was going to happen.
However, I didn't want to upset anyone more than I already had, and everyone tried to convince me that this was going to make things so much better. I wanted to believe them; I hoped that maybe I was wrong. I was also 100% under the impression based on my conversations with Dr. O. that once I got out of the hospital, I would be able to return to school and finish the semester, which was very important to me. So, on October 24, I had all my stuff packed, I met with all of my professors about keeping up with classwork while I was in the hospital (where I wouldn't even be allowed to join classes virtually), and my mom flew out to take me to the hospital. We sat around all morning waiting for them to call about what time I was supposed to come in to be admitted, only to find out that there were no beds left on the pediatric floor because there was a huge spike in RSV cases over the weekend, and they actually wouldn't be able to admit me until further notice. As much as I was dreading going to the hospital, I just wanted to get it over with, so this meant more days of waiting around for my imminent doom, not to mention the probably thousands of dollars my mom spent on plane tickets back and forth. I went to my Monday classes, telling my professors that actually, I would be in class today even though I told them over the weekend I would be in the hospital, and my mom flew back home.
But then, on Tuesday, the hospital phone lady (pretty sure she had an actual title but I don't remember what it was) called to say that now they did have a bed available, and they could admit me the next day. So my mom came back to LA in the middle of the night, and I was admitted Wednesday morning. I still had hope that once the doctor at the hospital, who was an expert in eating disorders and medical stabilization (I'll call her Dr. S.), saw that I was medically stable, she would tell me I could go home. She wasn't even there that day, though, and I had no such luck. Wednesday night was one of the worst nights of my life. I was terribly lonely, overwhelmed, and miserable; I didn't know how I would possibly last the three weeks they were saying I would need to stay (I was also told beforehand that it would be 7-10 days, so this was quite the shock).
Luckily for me, Dr. S. came in the next day, and when I expressed my concerns about whether the program was actually right for me, she said, "you're right, you probably don't need to be here. We're actually worried your insurance won't cover it because your weight is right on the cusp of being too high to be here." Just what I had been saying all month and everyone told me I was crazy for thinking! Of course, I know that everyone who wanted me to go to the hospital had my best interest at heart, but I won't lie that it felt good to feel like something I wholeheartedly believed wasn't actually crazy. Dr. S. told me that I could leave on Friday if I wanted to, or I could stay until Monday and they would do a gastric emptying study to make sure my stomach was working properly. Since the whole point of going there was to help me get better, I agreed to stay. This test could be done outpatient, but I had so much trouble getting appointments and tests scheduled, and I figured it would be better to do it on Monday rather than waiting a few more months until I could get it done somewhere else.
I don't mean to sound insensitive to people who have been in prison because I've never been there, but this hospital felt like a prison in some ways. This is what nearly all inpatient eating disorder treatment programs are like, which I find very concerning. I understand the point of all of their rules in terms of keeping people safe, but it is also so degrading, lonely, and overwhelming that I can't imagine how it helps people struggling with mental health issues. I had to ask every time I wanted to go to the bathroom or get a drink of water, and there was a nurse watching me all day. At night, they turned on an alarm on my bed, so I wasn't even allowed to get out of bed between 10 p.m. and 7 a.m., Some of the night nurses didn't mind if I did things in my bed at night like working on homework or watching TV, but others would yell at me if I turned a light on or made a noise after the bed alarm went on. I had been dealing with insomnia for the last few months, mostly as a result of all the pain, which was ironic since I was also always tired. But I hadn't gone to bed at 10 p.m. since middle school, and I hated just laying awake not being able to do anything. I got really cold on the first night and was trying to reach a jacket in the drawer next to my bed, but I accidentally set off the alarm, and the nurse assigned to my room that night wasn't in the best of moods. I wasn't allowed to go outside except for to this tiny garden in that didn't even get any sunlight because it was in between the hospital walls, and I could only go out there for half an hour a day in a wheelchair with a supervisor. I was allowed to take a shower at 4:30 every day for no more than fifteen minutes, and I had to sit on this uncomfortable chair in the shower and have a CNA watch me. My mom was allowed to stay during the day, but she had to leave every hour-and-a-half when it was mealtime, and she couldn't stay at night. We had three meals and three snacks every day at set times that were way different than my normal eating schedule. I was used to making meals or snacks and eating them over the course of an hour or two because eating too much ate made the pain a lot worse. We had 30 minutes to finish each meal and 20 for snacks, and anything we didn't finish would be supplemented with cups of disgusting, warm vanilla Boost (no offense, Boost). When Aspen was at EDAM, she met with the dietician every day to pick her meals for the next day, but patients at Torrance had to "earn" getting to pick by eating whatever the dietician sent them. She was very reasonable about it and would take into consideration what I told her I liked and disliked, but this policy was still frustrating. I had done a lot of experimenting to figure out what foods were easier for me to tolerate, and a lot of the things I was sent during my first few days were not on that list. I also figured that if I had to eat all that food, I might as well eat stuff that I liked, but I got a lot of stuff that was kind of disgusting before I got to pick my food. During meals, we had to pull our chairs and trays into the doorframe so that the nurse could watch both of the medical stabilization patients, but not far enough that we could see the other person. I didn't even know what color hair my neighbor had until about a week after I had been there when they let us go on a "walk" (which was about 50 feet from our rooms to the pediatric unit door) together. We couldn't do anything while we were eating: no reading, no homework, no visitors, no TV. I tried to talk the girl next door to me during meal times, but I could hardly hear her through the wall. Some of the nurses were super friendly and would make conversation, but others would literally just stare at us for half an hour. I really hated this rule (and frankly still don't understand it). At school, meal times were usually my only "breaks" during the day where I could read for fun or watch TV. Since it was so uncomfortable, I would try to do something I enjoyed to make it more bearable. And I feel like it would be better for people in these situations to watch TV or work on something or talk to somebody and have some kind of distraction instead of just staring at a wall stressing about how sick they feel or how much they're eating.
All of that being said, I was also very lucky because the medical stabilization program was geared toward adolescents and was on the pediatric floor, whereas the place Aspen went was for adults and was its own unit. There were a couple of nurses and doctors who were cranky and made me very uncomfortable, but a lot of them were incredible and were the only reason I was able to get through it. Some of them would stop by to say hi and see if I needed anything even if they were working on a completely different floor. They made up songs about taking vitals that I found very amusing even though I was one of the oldest people on the floor. They would take time out of their busy days to take me to the garden or to the activity room. They would make sure they were around when the people from the lab came to do blood draws because they knew I hated needles. The Child Life Specialist was one of the nicest people ever and brought us crafts and activities every single day. On Halloween, she organized a reverse trick-or-treat and had the nurses bring around toys and crafts to all the kids on the floor. When I was finally discharged, she brought bubble machines and confetti into my room and gave me a jar with encouraging notes from all of the nurses. I will always be grateful for all of the people that did everything they could to make me feel comfortable there.
You're probably wondering at this point what on Earth I'm talking about since I said I was going to be discharged on Monday. I wondered the same thing! Here's a little breakdown of how that week went:
Thursday
Dr. S.: You're right, you probably don't need to be here. You can leave tomorrow if you want to, but if you stay until Monday, we can do this gastric emptying study because I'm pretty sure you have gastroparesis, and then you can start taking something to help with that.
Ashley (after stressing for hours because she really wants to go home and her mom is leaving on Saturday and she doesn't want to be here alone all weekend): Okay, I guess I will stay until Monday.
Friday Dr. S.: After we do the test next week, where are you going to go?
Ashley: Back to school, I think. We found a few dieticians I can work with.
Dr. S.: You can't go back to school! You have to go to a residential eating disorder program.
Ashley: Oh, I thought we decided that wouldn't be helpful because I don't have an eating disorder. If I can't go back to school, I'd rather stay here than go to a residential place.
Dr. S.: Well, you're probably not sick enough to stay here.
Weekend
Ashley and family stresses all weekend about what to do next. They decide Ashley will come home for a few weeks and then go back to school once she is a little bit better.
Monday
Ashley: I think I'm supposed to be having the gastric emptying study done this morning.
Nurse: We don't have anything about that in your file.
Dr. S.: We decided to move it until Tuesday so that you will be closer to your goal calories when you have it done.
Ashley: Okay. So will I be discharged after the test?
Dr. S.: Well, your heart rate got really low this weekend, so we actually think you do need to stay here. And based on the test results, you might have to stay until we see if the medication is working.
This is how it went pretty much every day. I thought I would be leaving, but then there was some reason why I couldn't: my heart rate was too low, we had to wait on the medication, I was peeing too much and they thought something was wrong with my kidneys (this was actually because I felt bad always asking for another cup of water, so I sometimes secretly filled up an old cup from the sink in my room when no one was looking-- oops). I felt like I made a huge mistake deciding to stay because it began to feel like I was trapped there. I was so tired of the limbo that had been going on all month. The worst part was not knowing what was going to happen next or when.
The gastric emptying study showed that I had severe gastroparesis, which meant that my stomach was basically close to paralyzed, and food moved through my digestive system at a much slower rate than it was supposed to. After 90 minutes, the average person will empty 50-60% of their stomach contents, but mine only emptied 9%. Dr. S. said this was so severe that it was very unlikely it was the result of malnourishment, and something must have triggered it in the first place. This was very gratifying for two reasons: one, because I finally had some sort of diagnosis that proved I wasn't just making all of this up, and two, because it seemed like an easy fix. I wished one of the doctors I had seen earlier would have noticed this instead of dismissing it as being "all in my head" because then maybe we could've avoided all of this craziness (and the not-so-cheap hospital bill). All I had to do was take this medicine and I would feel better in as soon as a few days.
I finally got discharged the next Monday, twelve days after I was admitted. It was a lot longer than I thought I would be there, but I was also grateful that it wasn't longer because some people have to be there for a few weeks or even months. The kicker was that apparently, Dr. O. decided that I still couldn't come back to campus even though I had gained plenty of weight in the hospital. We fought against this, but Dr. O. said she would force me to take mandatory medical leave if I tried to come back. I cannot overstate how upset I was by this. I had done everything the school wanted me to, and I told them I was willing to do whatever they wanted when I came back. But there was absolutely no reason to force me to leave school. I was not posing a threat to anyone else, and my health wasn't in danger. The only reason they would give me as to why I couldn't come back was that I needed to keep gaining weight and it would be "too hard to do on my own." I was so tired of hearing this, though. No one had actually given me a chance to do it on my own. The doctors kept saying that they had seen other patients try to do it and fail because they fell back into their eating disorder habits, but I didn't have an eating disorder. They said I would be too uncomfortable that I wouldn't eat what I was supposed to, but they didn't know how I felt, and I was taking about a hundred different medications that were supposed to make eating easier. My parents kept reminding me that Aspen hadn't been able to make any significant progress on her own, but I am not Aspen, and it felt like I was being punished for her issues that had nothing to do with me. I understood that it was going to be hard, but the semester was almost over, and I had already spent pretty much every hour I was awake and not eating in the hospital catching up on schoolwork. I promised everyone that the second it became too hard, I would come home, but I really just wanted a chance to try to make it work.
I was finally able to convince Dr. O. to let me stay, I think mostly because, as I was told, they didn't actually have a strong enough case to force me to leave school. I still had to go to the Health Center every other day and get my blood drawn all the time, but I really had no trouble gaining weight, and I was back to my normal weight before I went home for Thanksgiving. I feel bad about this because I know a lot of people, including Aspen, really struggle to gain weight, but it was like some switch had been flipped and my weight just kept going up. I tried really hard for the first few days to exactly follow my meal plan, but I decreased it little by little, and not very long after I was discharged, I was gaining weight no matter how much or how little I ate in a day. I did my best to still get enough nutrients, but I stopped worrying so much about following my meal plan and I just ate what I could. It got to the point where it was a little bit concerning. I was thankful that it wasn't as hard for me as it was for Aspen, but it's also a little bit uncomfortable in our diet-obsessed society when the doctors who were once telling you to gain weight are now saying maybe you should slow down. I'm still not entirely sure why it happened so quickly; I gained nearly fifteen pounds in probably five or six weeks, and at that point, I was eating nowhere near my discharge meal plan. It felt great to prove everyone wrong (if not a little dishonest since I wasn't actually trying that hard), but that was about the only thing that felt good.
Comments